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Tom Kindlontomkindlon@disabled.social
2025-12-12

2/
From Australia:

Altered brain tissue microstructure and neurochemical profiles in long COVID and recovered COVID-19 individuals: A multimodal MRI study

sciencedirect.com/science/arti

Screenshot from Science for ME weekly update

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 #auscovid19 #CovidIsNotOver

@novid #novid

Altered brain tissue microstructure and neurochemical profiles in long COVID and recovered COVID-19 individuals: A multimodal MRI study — Thapaliya et al. "Our study identified altered signal intensity, abnormal tissue microstructure, and imbalanced neurochemicals in long COVID and COVID-19 recovered healthy controls. Importantly, we also found a significant association between T1w/T2w signal intensity and clinical measures, suggesting a potential link between myelin content and symptom severity."
Tom Kindlontomkindlon@disabled.social
2025-12-12

From the US:

Systems Immunology of Long Covid: Insights from the STOP-PASC Clinical Trial

medrxiv.org/content/10.64898/2

Screenshot from Science for ME weekly update

Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 #auscovid19 #CovidIsNotOver

Systems Immunology of Long Covid: Insights from the STOP-PASC Clinical Trial — Evan Maestri et al. "Despite considerable heterogeneity in LC, we have demonstrated via multicohort meta-analysis conserved dysregulation in inflammatory immune pathways. The proteins in the LCS Score which are consistently elevated in LC in multiple cohorts are associated with inflammation (IL6), monocyte (SIGLEC1/10) and neutrophil activation/granules (AZU1, PGLYRP1), and T/NK cell granzymes (GZMH, GZMA) suggesting a persistent dysregulated immune response."
Tom Kindlontomkindlon@disabled.social
2025-12-11

Integrative multi-omics framework for causal gene discovery in long COVID

journals.plos.org/ploscompbiol

Screenshot from Science for ME weekly update

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 #auscovid19 #CovidIsNotOver

Integrative multi-omics framework for causal gene discovery in long COVID — Pinero et al. "Most of the 32 genes are not strongly associated with individual symptoms when tested individually (AR is the only exception). However, their joint expression pattern reliably distinguishes patient subgroups, consistent with post-viral biology, in which pathway-level (not single-gene) dysregulation dominates."
Tom Kindlontomkindlon@disabled.social
2025-12-10

News Release 10-Dec-2025
Could hidden infections be fueling long COVID?

eurekalert.org/news-releases/1

"argues that co-infections acquired before or during COVID could cause symptoms to persist indefinitely for many people."

Full research paper:
dx.doi.org/10.7554/eLife.106308

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 #auscovid19 #CovidIsNotOver

News Release 10-Dec-2025 Could hidden infections be fueling long COVID? Peer-Reviewed Publication Rutgers University FacebookXLinkedInWeChatBlueskyMessageWhatsAppEmail For millions suffering from long COVID, their persistent breathlessness, brain fog and fatigue remain a maddening mystery, but a group of leading microbiologists think they may have cracked the case. The culprit for some long COVID cases, they suggest, might be other infections that accompany SARS-CoV-2. A review published in eLife by 17 experts, including those from Rutgers Health, argues that co-infections acquired before or during COVID could cause symptoms to persist indefinitely for many people.
Tom Kindlontomkindlon@disabled.social
2025-12-10

UK press release

£1.1m awarded to investigate links between ME/CFS and Long Covid

imperial.ac.uk/news/articles/m

Well done to ME Association & its supporters for raising the money for this study which involves "stool, blood and saliva samples"

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers

A new landmark study funded by The ME Association will help scientists to uncover shared pathways between ME/CFS and Long Covid. The three-year study, which will be the largest of its kind and led by Imperial College London, will enable researchers to build an immunological profile of the two diseases. The hope is to understand more about the two conditions and the pathways to lead to better development of treatments. ME (myalgic encephalomyelitis), also known as CFS (chronic fatigue syndrome), is a multisystem disease – most often triggered by a viral or bacterial infection. Symptoms include profound fatigue, sleep disturbance, post-exertional malaise, cognitive difficulties and a range of other symptoms like pain, headaches, nausea and intolerance to light and noise. The condition can often be difficult to diagnose because of its overlap in symptoms to other conditions. Long Covid occurs after viral infection with SARS-CoV-2 and has many symptoms in common with ME/CFS. For many people – an estimated two million people in the UK and 400-millon globally – Long COVID has adversely affected their day-to-day life, the level of disability often incompatible with ongoing full-time employment or education. Researchers still don’t fully understand what happens in the immune system that causes lasting symptoms for some people and not others.
Tom Kindlontomkindlon@disabled.social
2025-12-09

Well done & thanks to these healthcare professionals (PTs/similar) for this new e-letter 👏

"In the Long Run, Misleading Participants Will Harm More Than Help in Long COVID Research"

bmjopen.bmj.com/content/15/11/

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers
#PEM @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Published on: 9 December 2025 In the Long Run, Misleading Participants Will Harm More Than Help in Long COVID Research Todd E. Davenport, Professor & Chair University of the Pacific, Workwell Foundation Other Contributors: Staci R. Stevens, Exercise Physiologist Mark A. Faghy, Professor Jessica DeMars, Respiratory Physiotherapist J. Mark Van Ness, Professor & Chair Respect for persons, beneficence, and justice are bedrock ethical principles in science. They are especially important when studying vulnerable populations. Billias et al. argue that deception is necessary to assure the internal validity of their exercise study involving people living with long COVID.[1] Here, we assert the use of deception is ethically indefensible and scientifically unnecessary in this population. It undermines informed consent, increases risks for harms, exploits the vulnerability of participants, and erodes trust in science and health care, all while exploring a question that already has been asked and answered satisfactorily enough to inform clinical recommendations.
The Tiller 🌊🌦️🌈swoonie@mastodon.ie
2025-12-08

@UndeadMinotaur

@robotistry @herbster @mecfs

It’s really helpful to hear how other #pwLC experience “brain fog”, or “brain damage” as it’s called now that we have imaging tools that show us the damage in our brains.

For me, one of the worst aspects is that I can’t read and process scientific literature any more. If I try, my brain stops processing information after a few sentences into the text. Plonk, that’s it, buffer stop.

Tom Kindlontomkindlon@disabled.social
2025-12-07

Interesting long Covid research study recruiting in Victoria, Australia

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 #auscovid19 #CovidIsNotOver

Research Opportunity Do you live with long COVID and experience fatigue, brain fog, sleep problems, depression or anxiety? Researchers at Deakin University are testing whether gut-based therapy (faecal microbiome transplantation, FMT) could improve outcomes for people with long COVID. What’s involved: 5 visits at University Hospital Geelong 3 FMT or placebo enemas Blood, urine & stool samples Garmin watch to track activity, sleep & heart rate Online questionnaires you can complete at home Parking costs covered Eligibility: Adults 18–65 with a long COVID diagnosis and moderate to severe symptoms. Interested? Learn more by contacting the GLOW team at CTUClinicalTrialsUnit@barwonhealth.org.au | (03) 4215 3078Flyer
Billy Hanlonbhanlon15.bsky.social@bsky.brid.gy
2025-12-07

Are you a #pwME / #pwLC / #NEISvoid, desire to be involved in advocacy or community in some capacity, but unsure how to get started or where to go? Please feel free to reach out / DM me anytime if applicable [asterisk being for US residents] #MillionsMissing #MyalgicEncephalomyelitis #LongCOVID

Tom Kindlontomkindlon@disabled.social
2025-12-07

Association of foveal avascular zone (FAZ) enlargement with SARSCoV2 infection & #longCOVID -19

link.springer.com/article/10.1

"In our study, a significantly increased FAZ was shown for the group of patients with fatigue compared to the patients with no fatigue & to the control group"

@longcovid
#PwLC #PostCovidSyndrome #LC #PASC #postcovid #CovidBrain
@covid19@fedigroups.social #COVIDー19 #COVID19 #COVID #COVID_19 #SARSCoV2 @novid #novid #CovidIsNotOver #auscovid19

Tom Kindlontomkindlon@disabled.social
2025-12-06

Co-creating a social science research agenda for Long Covid

frontiersin.org/journals/publi

Screenshot from latest Science for ME weekly update

Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 #auscovid19 #CovidIsNotOver

Co-creating a social science research agenda for Long Covid — Cousins et al. "existing research points to patient experiences, public health impacts, a lack of standardized diagnostic and treatment protocols and pathways and the need for patient involvement as key areas of concern. What is not as clear is the extent to which these priorities are mirrored in the concerns expressed by those researching and living with Long Covid. Our agenda-setting exercise aims to address this gap."
Irish ME/CFS AssociationIrishMECFSAssociation@mastodon.ie
2025-12-05

News Release 4-Dec-2025

To treat #longCOVID, we must learn from historical chronic illnesses, medical researchers say

eurekalert.org/news-releases/1

Lots of discussion of ME/CFS in full paper
"The lingering shadow of epidemics: post-acute sequelae across history"
cell.com/trends/immunology/ful

#PAIS @mecfs
#MyalgicEncephalomyelitis #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID

News Release 4-Dec-2025 To treat long COVID, we must learn from historical chronic illnesses, medical researchers say Peer-Reviewed Publication Cell Press FacebookXLinkedInWeChatBlueskyMessageWhatsAppEmail 1918 Influenza victims crowded into an emergency hospital image: Influenza victims crowded into an emergency hospital near Fort Riley, Kansas in 1918. view more Credit: AP Photo National Museum of Health In a paper publishing in the Cell Press journal Trends in Immunology on December 4, scientists and doctors highlight the importance of studying long COVID in the context of other post-acute infection syndromes or chronic illnesses. By analyzing historical accounts of other epidemics, they say, researchers can gain important perspective on the profound effects of these chronic illnesses—with the goal of informing more effective interventions for treating them. “Post-acute infection syndromes are a long-overlooked but important area of medicine, and long COVID represents a contemporary manifestation of a phenomenon that’s been described for over a century,” says co-author Christine Miller of Yale School of Medicine.
Tom Kindlontomkindlon@disabled.social
2025-12-05

SARS-CoV-2 Spike Protein Amyloid Fibrils Impair Fibrin Formation and Fibrinolysis

pubs.acs.org/doi/full/10.1021/

Screenshot from latest Science for ME weekly update

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 #auscovid19 #CovidIsNotOver

SARS-CoV-2 Spike Protein Amyloid Fibrils Impair Fibrin Formation and Fibrinolysis — Henrik Westman et al. "Despite the limitations of the experimental setup with synthetic fibrils, our data do suggest that some, but not all, Spike-derived amyloid fibrils impacted fibrin folding and assembly and thereby cause impaired plasmin-mediated fibrinolysis."
Tom Kindlontomkindlon@disabled.social
2025-12-05

From Austria:

Postural orthostatic tachycardia syndrome is the most frequent cardiovascular autonomic disorder following COVID-19 infection or vaccination

link.springer.com/article/10.1

Screenshot from latest Science for ME weekly update

#POTS @pots @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 #auscovid19 #CovidIsNotOver

Postural orthostatic tachycardia syndrome is the most frequent cardiovascular autonomic disorder following COVID-19 infection or vaccination — Leys et al. "Here, we aimed to investigate the type and frequency of newly diagnosed and exacerbated CAD following COVID-19 infection or vaccination in a large case series referred to the Innsbruck Dysautonomia Center."
Tom Kindlontomkindlon@disabled.social
2025-12-05

From Germany

Post-COVID Fatigue Is Associated With Reduced Cortical Thickness After Hospitalization

onlinelibrary.wiley.com/doi/10

Screenshot from latest Science for ME weekly update

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 #auscovid19 #CovidIsNotOver

@novid #novid

Post-COVID Fatigue Is Associated With Reduced Cortical Thickness After Hospitalization — Tim J. Hartung et al. "MRI and neuropsychological testing were performed at 3 months after discharge." "Higher acute COVID-19 severity was associated with reduced cortical thickness, particularly in the olfactory system." "reduced cortical thickness of the temporal poles and the anterior and posterior cingulate gyrus was associated with more severe post-acute fatigue."
Tom Kindlontomkindlon@disabled.social
2025-12-05

From Australia:

Persistent lung & vascular inflammation in mild to moderate COVID-19 survivors detected by ¹⁸F-FDG PET/CT: A quantitative imaging study with implications for cardiovascular risk

link.springer.com/article/10.1

Screenshot from Science for ME update

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 #auscovid19 #CovidIsNotOver
@novid #novid

Persistent lung and vascular inflammation in mild to moderate COVID-19 survivors detected by ¹⁸F-FDG PET/CT: A quantitative imaging study with implications for cardiovascular risk — Verma et al. "this new analysis demonstrates strong positive correlations between lung and vascular inflammation, suggesting that the ongoing lung inflammatory response may reflect broader systemic inflammatory activity and could represent a potential mechanism underlying the increased CV risk reported post-COVID."
Tom Kindlontomkindlon@disabled.social
2025-12-04

From Belgium:

"These data demonstrate that IgGs from long COVID patients bind to peripheral sensory neurons and induce pain-related symptoms in mice."

biorxiv.org/content/10.1101/20

Screenshot from latest Science for ME weekly update
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 #auscovid19 #CovidIsNotOver

Pathogenic IgG from long COVID patients with neurological sequelae triggers sensitive but not cognitive impairments upon transfer into mice — Mignolet et al. "These data demonstrate that IgGs from long COVID patients bind to peripheral sensory neurons and induce pain-related symptoms in mice."
Tom Kindlontomkindlon@disabled.social
2025-12-04

Autoantibodies mediate pain and sensory dysfunction in post-COVID syndrome

researchsquare.com/article/rs-

Screenshot from latest Science for ME weekly update

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 #auscovid19 #CovidIsNotOver

Autoantibodies mediate pain and sensory dysfunction in post-COVID syndrome — Stuart Bevan et al. "Here we demonstrate that PCS patients with widespread pain share hyperalgesic sensory phenotypes and spontaneous activity in peripheral nociceptive fibres. Importantly, antibodies from these patients are sufficient to induce painful hypersensitivities and small-fibre neuropathy when administered to mice."
Tom Kindlontomkindlon@disabled.social
2025-12-04

From Italy

Extracellular vesicles from long COVID patients promote RUNX2-mediated cellular stress via dysregulated miR-204 and p53 pathway activation

biosignaling.biomedcentral.com

Screenshot from latest Science for ME weekly update

Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers

Extracellular vesicles from long COVID patients promote RUNX2-mediated cellular stress via dysregulated miR-204 and p53 pathway activation — Dalle Carbonare et al. "Our study demonstrates that LC-EVs carry a distinct molecular signature capable of inducing significant cellular alterations […] enriched in markers of platelet activation and contribute to a pro-thrombotic environment" "Upon entering target cells, LC-EVs promote the expression of RUNX2 and activate stress-related pathways involving p53, p21, and Sestrins, indicating a response to cellular stress […] showing impaired mitochondrial adaptability under metabolic strain, potentially explaining fatigue and exercise intolerance in LC patients."
illmarksillmarks@www.illmarks.com
2025-12-03

Symptom: Mast Cell Itching

https://www.illmarks.com/symptom-mast-cell-itching/

#allergicreactions #Allergies #allergy #art #bodyHorror #bodyMapping #buildingSafety #chonicillness #chronicIllness #claws #eds #ehlersdanlossyndrome #environmentalIllness #environmentalillness #fingers #formaldehyde #heds #hypermobile #hypermobility #hypermobilityspectrumdisorder #immunology #itched #itching #longCovid #longcovid #mastCell #mastCellActivationSyndrome #mastcell #mastcellactivationsyndrome #mastcelldisease #mastocytosis #mcas #medicalArt #MillionsMissing #nails #POTS #prop65 #publicHealth #publicHealth #pwLC #pwme #scratched #scratching #scratchy #severeallergy #vocs

A human in the center of a manila bookmark is covered from head to toe in red purple dark lines, in clusters often of 4 to 5 lines. They represent itching and scratching and cover the entire body some in long scratches and itches which go the length of a chin or from a hip down to almost the knee and some in short little bursts. They curve around body shapes, so even though there is nothing underneath them, the way they wrap around things imply the anatomical structures underneath. Some people say these lines evoke muscle diagrams, despite the fact they zig and zag around the body in ways which are not muscular. The hands are dramatically stylized, fingers splayed and holding tension, as if about the begin scratching again.

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